It is the purpose of this legislation to provide for the early identification of certain metabolic disorders in newborns in the District of Columbia so that referral and treatment, where appropriate, may be provided.
(Apr. 29, 1980, D.C. Law 3-65, § 2, 27 DCR 1087.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-311.
Legislative History of Laws
Law 3-65, the "District of Columbia Newborn Screening Requirement Act of 1979," was introduced in Council and assigned Bill No. 3-126, which was referred to the Committee on Human Resources. The Bill was adopted on first and second readings on January 22, 1980 and February 5, 1980, respectively. Signed by the Mayor on March 4, 1980, it was assigned Act No. 3-163 and transmitted to both Houses of Congress for its review.
Delegation of Authority
Delegation of authority pursuant to D.C. Law 3-65, the "D.C. Newborn Screening Requirement Act of 1979", see Mayor's Order 99-88, June 2, 1999 (46 DCR 5721).
Unless otherwise specified the following definitions apply:
(1) The term "metabolic disorder" means a disorder which results in a defect in the function of a specific enzyme or protein.
(2) The term "hypothyroidism" means those clinical conditions which result from abnormally low circulating levels of thyroid hormone.
(3) The term "newborn" means any infant born in the District who is under 4 weeks of age.
(4) The term "phenylketonuria," hereinafter referred to as "PKU," means the metabolic disease of the newborn in which metabolites of phenylalanine appear in urine.
(5) The term "homocystinuria" means a condition resulting from one of several genetically determined errors of methionine metabolism.
(6) The term "galactosemia" means a condition involving the inability to convert galactose to glucose.
(7) The term "maple syrup urine disease" means a condition resulting from the impairment of branched chain alpha-ketoacid dehydrogenase.
(8) The term "sickle hemoglobinopathy" means a condition in which a mutation in the hemoglobin results in abnormally shaped red blood cells that obstruct normal circulation and cause inadequate oxygenation of the body's tissues and vital organs. The term "sickle hemoglobinopathy" includes sickle cell anemia (homozygous sickle cell disease), sickle cell hemoglobin C disease, and sickle cell beta thalassemia.
(9) The terms "hospital" and "maternity center" mean those terms as they are defined in § 44-501(a)(1) and (2).
(Apr. 29, 1980, D.C. Law 3-65, § 3, 27 DCR 1087; July 25, 1985, D.C. Law 6-13, § 2(a), 32 DCR 3235.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-312.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
Law 6-13, the "District of Columbia Newborn Screening Requirement Act of 1979 Amendments Act of 1985," was introduced in Council and assigned Bill No. 6-46, which was referred to the Committee on Human Services. The Bill was adopted on first and second readings on April 30, 1985, and May 14, 1985, respectively. Signed by the Mayor on May 30, 1985, it was assigned Act No. 6-27 and transmitted to both House of Congress for its review.
(a) Each hospital and maternity center in the District of Columbia shall make available to every newborn delivered or cared for at that hospital or maternity center blood tests to screen for galactosemia, homocystinuria, hypothyroidism, maple syrup urine disease, PKU, and sickle hemoglobinopathy. Each hospital and maternity center shall inform the parent(s) of the availability of these tests and shall, unless parental consent is withheld under § 7-834(3) or an identical test has already been performed, take appropriate blood samples for analysis by a laboratory designated pursuant to subsection (b) of this section. The Mayor may, upon the advice of the Committee on Metabolic Disorders, issue rules pursuant to subchapter I of Chapter 5 of Title 2, requiring that hospitals and maternity centers make screening tests available for additional metabolic disorders.
(b) Each test shall be forwarded to a laboratory designated by the Mayor. A designated laboratory must be one which is currently certified by the College of American Pathologists and regularly participates in the appropriate quality control program for such testing by the College or is currently certified by the United States Center for Disease Control and regularly participates in the appropriate quality control program for such testing by the Center or has a federal license under the Clinical Laboratories Improvement Act of 1967 (42 U.S.C. § 263a), which permits the laboratory to solicit and accept in interstate commerce human specimens for the purpose of performing clinical laboratory examinations, for the purpose of detecting metabolic disorders.
(c) All test results shall be forwarded to the hospital or maternity center where the blood sample was taken. In addition, all positive test results shall be forwarded to the parent(s) and a physician designated by the District of Columbia government. This physician shall assist the parent(s) and the mother's physician (if she has one) in securing follow-up testing and treatment when appropriate.
(Apr. 29, 1980, D.C. Law 3-65, § 4, 27 DCR 1087; July 25, 1985, D.C. Law 6-13, § 2(b), 32 DCR 3235.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-313.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
For legislative history of D.C. Law 6-13, see Historical and Statutory Notes following § 7-832.
Delegation of Authority
Delegation of authority pursuant to Law 6-13, see Mayor's Order 86-36, March 3, 1986.
Delegation of authority pursuant to the "Preventive Health Services Amendment Act of 1985", see Mayor's Order 98-141, August 20, 1998 (45 DCR 6588).
Delegation of authority pursuant to Law 6-13, see Mayor's Order 86-36, March 3, 1986.
The Mayor shall insure that:
(1) Carriers of metabolic disorders should not be stigmatized and should not be discriminated against by any person within the District of Columbia;
(2) District of Columbia policy regarding metabolic disorders should be made with full public knowledge, in light of expert opinion, and should be periodically reviewed to consider changing medical knowledge and ensure full public protection; and
(3) Participation of persons in metabolic disorder programs in the District of Columbia should be wholly voluntary, and that all information obtained from persons involved in metabolic disorder programs in the District of Columbia should be held strictly confidential, except as provided for in subparagraph (D) of this paragraph; and that in carrying out the mandate of this paragraph the Mayor shall further insure that:
(A) No test be performed on any newborn over the objections of his or her parent and that no test be performed unless such parent is fully informed of the purpose of testing for metabolic disorders, and is given a reasonable opportunity to object to such testing;
(B) No program requires mandatory participation, or restriction of childbearing, or be a prerequisite to eligibility for, or receipt of, any other service or assistance from or to participation in any other program;
(C) All participants in programs on metabolic disorders be protected from undue physical or mental harm, be informed of the nature of risks involved in participation in such a program or project, be informed of the nature and cost of available therapies or maintenance programs for those affected by metabolic disorders, and be informed of the possible benefits and risks of such therapies and programs; and
(D) Except for statistical data compiled without reference to the identity of any individual, all information obtained from any individual or from specimens from any newborn shall be held confidential and be considered a confidential medical record except for such information as the parent consents to be released. The parent must be informed of the scope of the information requested to be released and the purpose for releasing such information, prior to the release of any confidential information.
(Apr. 29, 1980, D.C. Law 3-65, § 5, 27 DCR 1087.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-314.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
Delegation of Authority
Delegation of Authority pursuant to D.C. Law 3-65, "District of Columbia New Born Screening Requirement Act of 1979", see Mayor's Order 2004-172, October 20, 2004 (51 DCR 10494).
(a) The Committee on Metabolic Disorders (hereinafter referred to as the "Committee"), shall be composed of 9 members. The members shall be appointed by the Mayor. Each member shall serve a term of 3 years or until his or her successor is appointed and qualified, except that in the initial appointments 3 members shall serve for 1 year, 3 members for 2 years and 3 members for 3 years. No member shall be appointed to more than 3 consecutive 3-year terms. The members of the Committee shall serve without compensation.
(b) Four members of the Committee shall be consumer members. A consumer is defined as a person who is not a health professional, nor involved in the administration or ownership of any health care institution or health insurance organization, nor the spouse of a health professional, administrator, or owner. Two of the consumer members shall be appointed from a list of 5 names submitted to the Mayor by the District of Columbia Association for Retarded Citizens, Inc. Five of the members of the Committee shall be nonconsumers. Four of the nonconsumer members shall be licensed physicians knowledgeable in the diagnosis and treatment of metabolic disorders. At least 1 of the physicians shall be either a geneticist or an endocrinologist. The Director of the Department of Human Services, or his or her designate, shall serve as an ex officio nonvoting member of the Committee.
(c) When a vacancy on the Committee occurs for any reason other than the normal expiration of a term of office, a member shall be promptly appointed, to complete the unexpired term of the resigning member. The replacement member shall be selected in the same manner as outlined in subsection (b) of this section.
(d) The Mayor shall appoint a Chairperson from among the members of the Committee to serve from the time of the Committee formation until December 31st of the year of the formation of the Committee. Thereafter the Mayor, each year, shall appoint a Chairperson to serve a 1-year term to run from January 1st to December 31st of each year.
(e) The full Committee shall meet at least twice each year. Business may be conducted if a majority of the members are present.
(Apr. 29, 1980, D.C. Law 3-65, § 6, 27 DCR 1087.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-315.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
The Committee shall:
(1) Gather and disseminate information to further the public's understanding of metabolic disorders;
(2) Consult the public, especially committees and groups of persons particularly affected by metabolic disorder programs;
(3) Make available to the public information on the operation of all programs on metabolic disorders within the District of Columbia, except for confidential information;
(4) Reevaluate on a continuing basis the need for and efficacy of newborn screening tests for galactosemia, homocystinuria, hypothyroidism, maple syrup urine disease, PKU, and sickle hemoglobinopathy;
(5) Recommend to the Mayor any additional screening tests for metabolic disorders that should be added to those required under § 7-833(a);
(6) Recommend to the Mayor any screening tests for metabolic disorders required under § 7-833(a) that should be deleted;
(7) Consider the incidence of each metabolic disorder and the cost of detection and management of each metabolic disorder, and, where appropriate, consult District of Columbia and national experts concerning the medical, psychological, ethical, social and economic effects of programs for the detection and management of metabolic disorders;
(8) Keep the Mayor informed as to new and improved techniques for screening and testing newborns for metabolic disorders; and
(9) Recommend to the Mayor a laboratory or laboratories for designation under § 7-833(b).
(Apr. 29, 1980, D.C. Law 3-65, § 7, 27 DCR 1087; July 25, 1985, D.C. Law 6-13, § 2(c), 32 DCR 3235.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-316.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
For legislative history of D.C. Law 6-13, see Historical and Statutory Notes following § 7-832.
The Committee shall submit to the Mayor and the Council on January 1st of each year a report summarizing the activities of the Committee, and containing any recommendations to the Mayor and the Council which the Committee deems necessary regarding problems of metabolic disorders.
(Apr. 29, 1980, D.C. Law 3-65, § 8, 27 DCR 1087.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-317.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
If a newborn's parents are indigent, the government of the District of Columbia shall pay all costs related to screening under this subchapter. If a newborn's parents are indigent and the child's residence is in the District of Columbia, the government of the District of Columbia shall pay any subsequent costs for follow-up testing and treatment. The Mayor shall define "indigency" under this section and may establish a sliding scale of partial payment by the District of Columbia government based on the parents' reasonable ability to pay some of the costs.
(Apr. 29, 1980, D.C. Law 3-65, § 9, 27 DCR 1087; July 25, 1985, D.C. Law 6-13, § 2(d), 32 DCR 3235.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-318.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
For legislative history of D.C. Law 6-13, see Historical and Statutory Notes following § 7-832.
Delegation of Authority
Delegation of authority pursuant to Law 6-13, see Mayor's Order 86-36, March 3, 1986.
There is hereby authorized to be appropriated out of the general revenues of the District of Columbia government sufficient funds to carry out the requirements of this subchapter.
(Apr. 29, 1980, D.C. Law 3-65, § 10, 27 DCR 1087; July 25, 1985, D.C. Law 6-13, § 2(e), 32 DCR 3235.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-319.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
For legislative history of D.C. Law 6-13, see Historical and Statutory Notes following § 7-832.
This subchapter shall take effect on October 1, 1980, after a 30-day period of Congressional review following approval by the Mayor (or in the event of veto by the Mayor, action by the Council of the District of Columbia to override the veto) as provided in § 1-206.02(c)(1).
(Apr. 29, 1980, D.C. Law 3-65, § 11, 27 DCR 1087.)
HISTORICAL AND STATUTORY NOTES
Prior Codifications
1981 Ed., § 6-320.
Emergency Act Amendments
For temporary authorization for the establishment of a program to provide early intervention services designed to meet the developmental needs of infants and toddlers from birth through 2 years of age and their families on a sliding fee scale to provide a system of payment for early intervention services based on the income of the family, see § 2 of the Early Intervention Services Sliding Fee Scale Establishment Emergency Act of 1994 (D.C. Act 10-320, August 4, 1994, 41 DCR 5369), § 2 of the Early Intervention Services Sliding Fee Scale Establishment Congressional Adjournment Emergency Act of 1994 (D.C. Act 10-329, October 21, 1994, 41 DCR 7160), and § 2 of the Early Intervention Services Sliding Fee Scale Establishment Congressional Adjournment Emergency Act of 1995 (D.C. Act 11-1, January 18, 1995, 42 DCR 537).
Section 3 of D.C. Act 10-320 provides that the Mayor shall issue rules to implement the provisions of the act.
Section 3 of D.C. Act 10-329 provides that the Mayor shall issue rules to implement the provisions of the act.
Section 3 of D.C. Act 11-1 provides that the Mayor shall issue rules to implement the provisions of the act.
For temporary authorization for the establishment of a program to provide early intervention services designed to meet the developmental needs of infants and toddlers from birth through 2 years of age and their families on a sliding fee scale to provide a system of payment for early intervention services based on the income of the family, see § 2 of the Early Intervention Services Sliding Fee Scale Establishment Emergency Act of 1994 (D.C. Act 10-320, August 4, 1994, 41 DCR 5369), § 2 of the Early Intervention Services Sliding Fee Scale Establishment Congressional Adjournment Emergency Act of 1994 (D.C. Act 10-329, October 21, 1994, 41 DCR 7160), § 2 of the Early Intervention Services Sliding Fee Scale Establishment Congressional Adjournment Emergency Act of 1995 (D.C. Act 11-1, January 18, 1995, 42 DCR 537), § 2 of the Early Intervention Services Sliding Fee Scale Establishment Emergency Act of 1996 (D.C. Act 11-188, January 25, 1996, 43 DCR 395), and see § 2 of the Early Intervention Services Sliding Fee Scale Establishment Congressional Review Emergency Act of 1997 (D.C. Act 12-41, March 31, 1997, 44 DCR 2089).
Section 3 of D.C. Act 12-41 provides that the Mayor shall issue rules to implement the provisions of the act.
Legislative History of Laws
For legislative history of D.C. Law 3-65, see Historical and Statutory Notes following § 7-831.
